Cancer was easier than caring for her aging parent

Ruth Ho (right) and her mother Rose Ho at their Vancouver home. Ruth is Rose's primary caregiver.Photo by
Ric Ernst

Ruth Ho has fought cancer twice. But the Vancouver resident says looking back, those battles were absolutely nothing compared to how hard it’s been to care for her aging parent.

“My cancer was so much easier,” said Ho, who has been caring full-time for her 89-year-old mother, Rose, who has advanced dementia, for more than five years.

“My cancer was all about me and my decisions. I was in control. But with my mother, I don’t have that control. That is really, really hard.”

Ho will soon be among the first wave of boomers to enter their senior years and her story paints a stark picture of the challenges caregivers in this demographic will be up against as their parents and then spouses age.

Ho was a high-powered career woman who worked and taught in the fashion industry before her mother fell ill. She had to give up her career, move her mother into her condo with her, and now her life completely revolves around her dependent mother, a former nurse at Victoria General Hospital who now needs around-the-clock nursing care herself.

“As it has advanced, she’s needed more and more time. That’s the hard thing to realize, it just consumes, 24 hours,” Ho said. Caregiving, she said, “has taught me patience like I have never known.”

She is a member of Canada’s vast invisible health-care workforce, an army of family caregivers turned bedside nurses estimated at up to 2.7 million people strong, according to Statistics Canada. Together, these Canadians are providing an estimated $25 billion worth of free care for their loved ones each year, and spending another $80 million each year for expenses to provide that care, recent studies have shown. If family caregivers were suddenly unable to care for their loved ones en masse, the impact would have the force of an economic bomb.

“They prop up the whole system for free,” said University of Victoria associate professor of nursing Kelli Stajduhar, who works in the Centre on Aging and has been researching caregivers and palliative care for more than 12 years.

“Family caregivers actually are the primary health-care system in Canada. The system would completely collapse if they didn’t have the caregiver labour of families,” Stajduhar said, adding that many caregivers even do the work of nurses, administering medicines, giving injections and cleaning wounds — things they would never be asked or even allowed to do in a hospital.

“We’re asking them to do jobs they don’t feel prepared for,” Stajduhar said.

But legions of Canadians are getting this kind of on-the-job medical training as they look after their aging parents and spouses.

According to Statistics Canada’s 2008 report, Eldercare, the “sandwich generation” will only grow as baby boomers age. Already, the report states, one in five Canadians over 45 years old was caring for a senior in 2007 — some 2.7 million caregivers. In the Lower Mainland/Sea-to-Sky corridor, this translates to more than 134,000 residents aged 45 to 65 in the province looking after aging seniors. But in addition to that, a quarter of senior caregivers are seniors themselves, the report found, meaning another 165,000 seniors in the region are struggling to give care as they themselves age.

Nearly 60 per cent of caregivers were women, according to StatsCan, three quarters were married (and likely had children) and 57 per cent were employed. Families are picking up the slack as the majority of seniors age at home: 70 per cent of senior care was provided by close family members, most of whom provided care an average of five to seven years, with 10 per cent of caregivers looking after a loved one for more than 13 years.

Several social patterns are reducing the pool of family caregivers. As the population grows older, fewer spouses will be alive to take care of their partners. Women more often have jobs outside of the home, making it harder for them to care for their parents. And they are having their own children later, so often still have kids at home when their parents begin to need care, creating a “sandwich generation” of boomers trying to balance it all.

And these women can also become what’s called “serial caregivers,” caring for children, then senior parents or in-laws, then an aging spouse. With no break or time to themselves, they can burn out easily. Families are also smaller, with fewer siblings to share the care of older parents, and these days they are often living far apart.

“Until the baby boomer generation begins to die, seniors requiring some form of care will outnumber the number of middle-aged and senior children able to care for them,” the report states.

“With more people living into their 80s, we can only expect health-care costs to continue to grow. We cannot avoid the reality of higher future costs to simply maintain our current standards of care. In this endeavour, family, friends and communities will play a vital role. Governments alone cannot spend enough to pay for comprehensive care of seniors.”

“We need local caregiver support programs in every community. You would be astounded by how few there are. A lot of programs have been cut,” said Bouvet, a caregiver herself for her 86-year-old mother.

“But the other thing is that caregiver support is not seen as part of our health-care system, as it should be. The caregiver needs to be seen as a partner in care, but they are seen as somebody who gets in the way. Caregiving is not valued.”

Her organization has run programs for caregivers such as support groups, webinars, art therapy, yoga, music, drumming, dance and improv sessions to help ease the burden of burnt-out caregivers.

The stress of caregiving can be debilitating. One 1999 study on caregiving as a risk factor for mortality, published in the Journal of the American Medical Association, found that elderly caregivers of spouses who come under stress have a 63-per-cent higher mortality rate than others of the same age.

“It’s a job that takes a huge amount of emotional, physical and financial energy,” says Barb MacLean, executive director of the Victoria-based Family Caregivers’ Network Society.

“The research is very clear that caregivers are at a higher risk for illness themselves and suffer depression and chronic illness. They get too little sleep, they can have a terrible diet, no time for exercise, and they can be too busy to go to the doctor themselves. Their needs are put last,” MacLean said.

“But if the caregiver gets sick, then what? You’ve got more people entering the health-care system and ultimately being placed into a facility.”

Caring for a loved one with a long-term chronic degenerative condition that leaves them ill for years can be especially hard on caregivers.

Jan Robson, the Alzheimer Society of B.C. dementia helpline co-ordinator, said support for caregivers is crucial when an estimated 17 per cent of Canadians report their immediate families have been affected by dementia.

She says the helpline gets more than 100 calls a month from both people with dementia and caregivers looking for help.

It can be a tough diagnosis to cope with.

“You’ll often hear a lot of anger: ‘This wasn’t in the retirement plan.’ And there can be denial. You get a bad day and are prepared to accept something is wrong, but then you get a good day and think maybe you are better. Grief is kind of the underlying substratum. And because the disease is progressive, you can go through grief to acceptance and then things deteriorate again and the cycle can start all over. There can be depression on both sides, the person with dementia and the caregiver. A feeling of hopelessness after getting a diagnosis like, ‘My life is over.’ This is why we really encourage people to contact the society.”

The society, she says, offers Minds in Motion, a fitness and social program; referrals to the society’s FirstLink program for the recently diagnosed; support groups for both people with dementia and caregivers, and education programs.

Caregivers need special attention, too, Robson said: “When you are dealing with Alzheimer’s or another dementia, this is a marathon, not a sprint, so you have to look after yourself.”

There are other risks of caregiver burnout.

A lack of knowledge and over-work can in some cases lead to neglect or even abuse — verbal, physical, financial or otherwise — of dementia patients either by home or institutional care aides, explained Gloria Gutman, the president of the International Network for the Prevention of Elder Abuse.

“A person that is cognitively impaired can wear out a caregiver. Both the patient and the caregiver can get short and act out and that can lead to abuse. And the assumption is that a person with dementia doesn’t know what they are talking about, so if they report abuse they may not be taken seriously,” she said.

In order for caregivers to cope, legal reform and changes to government and health-care systems will be crucial.

A 2010 report from the Canadian Centre for Elder Law, Care/Work: Law Reform to Support Family Caregivers to Balance Paid Work and Unpaid Caregiving, recommends changing federal employment leave laws to allow for income replacement and job protection for caregivers for more than just family end-of-life care. It also advises changes to the Employment Standards Act to allow employees to request work flexibility to meet the demands of caregiving.

The federal caregiver tax credit should also be expanded and changes made to pension plans so that caregivers are not penalized for leaving work to care for a loved one, the report says. B.C. could also consider a direct income support stipend for low-income caregivers, as is available in Nova Scotia.

But in the meantime, caregivers keep giving as much as they can for as long as they can, and live for the little rewards.

For Ho, that’s knowing that she’s doing everything she can to help her mother in her last years.

“I’m very aware that I won’t have her for a long time, so I want to make sure her last years are her best and that she is happy and content. And I can say right now she is very happy and content,” Ho said.

As for herself, when caregiving gets hard, she tries to focus on the incredible gift she is giving her mother.

“When I put her to bed at night, she has gotten in the habit of saying, ‘Thank you for taking such good care of me. I don’t know what I would do without you,” Ho recalled, tearing up. “Those are the wins you have to hold on to.”

Comments

We encourage all readers to share their views on our articles and blog posts. We are committed to maintaining a lively but civil forum for discussion, so we ask you to avoid personal attacks, and please keep your comments relevant and respectful. If you encounter a comment that is abusive, click the "X" in the upper right corner of the comment box to report spam or abuse. We are using Facebook commenting. Visit our FAQ page for more information.

Almost Done!

Postmedia wants to improve your reading experience as well as share the best deals and promotions from our advertisers with you. The information below will be used to optimize the content and make ads across the network more relevant to you. You can always change the information you share with us by editing your profile.

By clicking "Create Account", I hearby grant permission to Postmedia to use my account information to create my account.

I also accept and agree to be bound by Postmedia's Terms and Conditions with respect to my use of the Site and I have read and understand Postmedia's Privacy Statement. I consent to the collection, use, maintenance, and disclosure of my information in accordance with the Postmedia's Privacy Policy.

Postmedia wants to improve your reading experience as well as share the best deals and promotions from our advertisers with you. The information below will be used to optimize the content and make ads across the network more relevant to you. You can always change the information you share with us by editing your profile.

By clicking "Create Account", I hearby grant permission to Postmedia to use my account information to create my account.

I also accept and agree to be bound by Postmedia's Terms and Conditions with respect to my use of the Site and I have read and understand Postmedia's Privacy Statement. I consent to the collection, use, maintenance, and disclosure of my information in accordance with the Postmedia's Privacy Policy.